How do we decide what to do for our kids moms fighting autism talk for may 3 2011

How do we decide what to do for our kids?

Joshua D. Feder, MD Momsfightingautism webinar May 3 2011

Joshua D. Feder, M.D.

Director of Research, Graduate School Interdisciplinary Council on Developmental and Learning Disorders Assistant Clinical Professor, Department of Psychiatry, UCSD School of Medicine

Disclosures

• ICDL – ‘1/4 time’ - teaching, research, advocacy

• NIMH/ Duke University – minimal – for time spent in pharmacogenetic research activities

Questions • What does research tell us?

• What does clinical experience tell us?

• What interventions are right for each of our kids and for our unique families?

• How do we organize them all into a real plan?

Wide Array of Symptoms…

•Activity •Attention, focus, distractibility •Anxiety, panic, fears •Cognition •Communication & Language •Depression, poor self esteem •Mood Instability (“aggression”)

•Motor Planning, motor tone •O/C, rigidity, Perseverative •Reciprocal interaction •Sensory Sensitivity •Repetitive movements •Tics •Safety!

•Sleep

Dizzying Numbers of Therapies...

- Discrete Trial - FastForWord - DIRÂŽ/Floortime - Hyperbaric Oxygen - Music Therapy - Picture Exchange Communication System (PECS) -Pivotal Response Training -Mixed Developmental-Behavioral Approaches - Occupational Therapy - Rapid Prompting Method - Relationship Development Intervention - SCERTS Model

- Secretin - Sensory Integration/Sensory Processing - Social Stories - Speech and Language Therapy - TEACCH - Anti-Yeast Therapy - Dietary Interventions - Vitamins/Nutritional Supplements -Medication for Treating Autistic Symptoms - many more‌.

Old School • • • •

Educational placement – spun didactics Behavioral therapies – spun like CBT Speech therapy – drilling words, scripts Occupational therapy – ‘hand over hand’ from writing to throwing • Medication – mainly for aggression

Recent twists

• ‘Biomedical’ - supplements, diets, etc.

• Sensory integration – recognition of the huge range of individual differences • Relationship based interventions – spun from infant mental health

New Ideas – Necessary, yet Caveat Emptor • We need them: complex problems require complex, multipart interventions • Every Idea Has Germ of Truth • But when people become believers or businessmen they may leave science and judgment behind • We need research & we need to use good judgment

How to assess a therapy?

• Birth of a therapy: lab? legitimate people developing it? Who is legitimate?

• Guarantees of results are suspect • Follow the $ • Research: open sources, legitimate peer review, research method, or only unscreened anecdotes

Informed Consent • We deserve to know what is out there: don’t let people hide it from you.

• We deserve to know the benefits and what proof there is or isn’t for these benefits • We deserve to know the risks • So we we can make truly informed decisions based on our own family culture and values

• • • • • • • • •

Diagnosis Target Symptoms Treatment Protocol Alternative Treatments Results of No Treatment Side Effects FDA Labeling: ‘experimental’ Consent & Assent Comments, Questions & Concerns: ‘track closely’

INFORMED CONSENT IS A PROCESS

The research is always mixed • Our kids are all different • It might not be a good fit for the child or for the family • So we can’t just do what one study says

Evidence Based Practice • How to respond to uncertain circumstances • While maintaining autonomy for families to choose what they think is best • Began in 1996 with Sackett • Institute of Medicine of the National Academy of Sciences adopted it in 2001.

The beginning: Evidence Based Medicine Based

Medicine • Sackett, et. al. British Medical Journal 1996;312:71-72 (13 January) • “the conscientious, explicit, and judicious use of current best evidence in making decisions about the care of individual patients.”

Evidence Based Practice: • Adding the elements of family culture and values • Opening up to all clinical interventions • And placing it in the context of informed consent.

Often Confused With: • Evidence Based Intervention - actually synonymous • Evidence Based Research – refers to research without clinical judgment or family or informed consent • Evidence Based Treatment – refers to research on specific treatments, usually without clinical judgment or family or informed consent • Best Practices – refers to (self-)appointed panels of ‘experts’ – usually clinical opinion, often without clear reference to a process of rational thinking

Why do we need EBP” • Because our research is so far from perfect • Because research often does not apply to real people • Because we need to use clinical judgment in applying what we know • Because families must retain the right to (informed) choice in treatment

The 3 Core Elements of EBP as they relate to informed consent

The Many Therapies Feder’s Confidence in a Treatment: • A Lots of prospective data and clearly relevant to child. Few or no significant side effects.

• B Lots of data but not always relevant, or data is limited but supportive, relatively safe when done well • C Mixed data, and/ or reasonable theory, not necessarily dangerous • D No positive data, and/ or not enough data, and/ or unclear theory, and/ or only unscreened anecdotal data, and/ or safety concerns, but probably some people who have apparently clearly benefitted • F Negative data, and / or significant evidence of danger

A • None

B Behavioral Training

• • • • • • •

Discrete Trial ABC's antecedant, behavior, consequence ABA Applied Behavioral Analysis Functional Behavior Assessment Data driven Behaviors can be changed B for frequent lack of relevance and over-focus on compliance (annoys the children).

B Cognitive Behavioral Therapy • E.g. for OCD, anxiety, depressive symptoms • Can be effective, for the right person, and if done well • Problematic when executed without attention to the surround, e.g., talkative intellectualizing person who does not change

B DIR®/Floortime • • • •

Makes sense, I think it works great Great new prospective research Circlestretch.blogspot.com ICDL.com

D.I.R.- Heir to the BPS (biopsychosocial) approach • Developmental • Individual Differences • Relationship-based

Developmental • Emotion is the glue to cognition, learning, and development (e.g. impact of post-partum depression on the infant, etc.)

• Stages of social-emotional development • The key to relating and learning

Individual Differences • • • • • •

Sensory: 5 external plus internal Motor: tone, core, planning Receptive communication: incl non-verbal!

Expressive communication: incl non-verbal!

Visual-spatial(so much of our usual brain power) Executive function (idea, plan, steps, execute, adapt)

Relationship Based: • Co-regulation • Engagement • Flow

circlestretch Help the child be…

• Calm enough to interact • Truly connected to others • In a continuous expanding balanced back and forth flow of interaction “Go for that gleam in the eye!” http://www.circlestretch.com

Organizes the entire intervention‌.

B Inclusion • Being in a regular class, no matter how challenged the person is • Associated with some of the best outcomes for function • Social modeling • Win-win when done right for all students • Safety can be a big concern, support to staff is rare

B Medication for Autistic Symptoms • Research is mixed – two ‘approved’ drugs • Lots of off label use, but that is the nature of the medical field • Can help a good plan work well • Can’t make up for a bad plan • Often takes a lot of thoughtful trials • See Circlestretch.com • B for lack of reliable efficacy, side effects

B Picture Exchange Communication System (PECS) • Very helpful addition to communcation • Child is less frustrated when he can ask • B for over-reliance on ‘manding’ vs. expressive communication, and for lending to reduced expectations of the child

B Pivotal Response Training • • • • •

It’s a more democratic version of behavioral Relevance still an issue at times Some initiative, but limited Lots of research B for relevance

B Mixed Developmental-Behavioral Approaches Early Start Denver Model, Project ImPACT, BRIDGE… •Early studies encouraging •Hope for the ‘best of both’ •Mostly parent driven •Most tend to be more goal driven rather than development driven •B for early in development and need for better attention to reflective process, individual differences and child centering.

B Occupational Therapy • • • •

fine motor skills – critical area gross motor skills – critical area sensory integration - critical area B for frequent top-down delivery, sensory breaks that turn into escape, and research on efficacy that is convincing to some, not to others

B One on One Aides (para-professionals) • B - Good, engaging people who can support development and facilitate interactions are rare gems and can be the key reason a child improves.

• Over-dependence vs. ‘Anne Sullivan’ • C, D, F - Rotating aides to avoid ‘dependence’; poor communication or management in the team (usually failing to adequately include parents and outside clinicians)

B Relationship Development Intervention • Setting up social problems to solve in thinking, relating, and communicating • Research is supportive but not direct (yet) • Thinking about thought - makes explicit what we do not usually think about. Can be helpful but takes time to process in the moment • B for awaiting more research

B SCERTS (Social Communication, Emotional Regulation and Transactional Support)

• Does all that • Less attention to family dynamics • Less attention to individual differences

B Social Stories • Teaching flexibility • Usually we do x, sometimes y happens instead.

That’s ok….

• A small and useful piece of a bigger pie • Beyond this, there is a great, Talmudic-inspired schema: ‘it’s great when things happen the way we expected…’

B Special Day Class • Aka resource room – SDC may ‘no longer exist’ • More staff to students • Limiting socially • Lower expectations

B Speech and Language Therapy (‘Communication’) • This is a vital service • Requires talented practitioners: attempts to ‘teach’ langiage behaviorally are, in my opinion, misguided • Drill and kill can be top down (gets a C,D, or F) • Communication before and beyond speech is critically important: non-verbal cuing, engaging and flowing • Repair of broken communication might be the single most important concept in all of treatment

B Social Skills Groups • Universality – being with others with similar challenges • Getting out in the community and doing things • Safety issues • Can be very didactic • Research, what research?

B Supportive Psychotherapy • Many people on the spectrum respond to empathy and understanding • Many people spend time sitting and being understanding without really helping the client

B TEACCH (Treatment and Education of Autistic Communication Handicapped Children) • Structured teaching – really works for learning tasks and routines • Visual models and schedules are usually very helpful for these persons • ‘Comforting’ routines vs. failure to develop flexibility and initiative

C • • • • • • •

Auditory Integration Training (AIT) The Musical Ear Tomatis, Berard, Samonas, others Headphones FastForWord - proprietary Earobics – stripped down FFW The Listening Program – passive Why a C? Research issues, rule of 1/3’s

C Dietary Interventions • • • •

Gluten Free Casein Free Feingold (salicylate free) Ketogenic - esp. for intractible seizures Why a C? Mostly poorly researched, anecdotal

C Dogs and Dolphins • • • • • •

Affectively engaging - memorable Teach a child to fetch Research..anecdotal Expensive (dolphins), expensive over time (dogs) Untraining your therapy dog Unrealistic expectations of socialization

C Hyperbaric Oxygen • The theory?

• Safe enough, done right • Research is mixed at best

C Music Therapy • • • •

Lovely Interesting theories and procedures Engaging for many Research is not clearly vetted.

C Vision Therapy • • • •

Maybe the person sees very differently Maybe change with eye exercises, prisms Anecdotal, rule of 1/3’s…

Research hotly disputed

C Vitamins/Nutritional Supplements • • • • • •

There are people who do not eat well Lots of theories Lots of articles in non-medical journals Lots of testimonials Lots of sales Why a C? Avg of B’s and D’s…TOO MANY CHARLATANS – hard to find reputable people

C Yeast Eradication Therapy • • • •

Theory…

Labs that (always) find it…

Lots of anecdotal reports of improvement C for relatively benign approach - Nystatin

D Oral Chelation • Wonderful anecdotes…many families are really certain it has helped • Why a D? Hard to do safely • Why a D? Theory keeps getting disproved

D Rapid Prompting Method • • • • • •

Typing for non-verbal people ‘Trapped inside’ Incredible stories Research issues Proprietary Don’t be shocked if it rises to a B…

D Secretin • • • •

Doesn’t work Mild side effects Expensive clinics Also oral treatment…

F Marijuana • • • •

Kills hippocampal cells (memory) Inhibits initiation and motivation Predisposes to psychosis (Smoke: extremely carcinogenic)

F Therapeutic Holding • Some similarities to good sensory OT • Once had a respectable following • Misused by many – some deaths

F IV Chelation • Dangerous • Theory keeps getting disproved

Bottom Line Create an Ongoing Process to Keep Team Focus on Engagement • • • • • •

Engagement organizes the intervention Repair becomes the golden moment Pulls for individualized understanding to make it happen more Leads to developmental progress, ever more complex All therapies become coherent sub-parts of the plan Critically important to meet regularly and problem solve

One way to organize it‌

Resources

• ICDL.com • Circlestretch.com • The Learning Tree, by Stanley Greenspan.

Blends all therapies together